Introducing myself

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gr8tful
Regular Member


Date Joined Jan 2013
Total Posts : 79
   Posted 2/4/2013 10:31 PM (GMT -6)   
I just wanted to introduce myself. I was diagnosed with Lupus at the age of 25. It has wreaked havoc with my body over the years but the main thing has always been arthritis. I had been to the same rheumy who for years told me that I wouldn't have any joint damage because the type of arthritis that went with Lupus didn't cause that. Because of a move I changed doctors who did a whole new workup as if I was being seen for the very first time. Unfortunately I do have damage-lots of it-and a firm diagnosis of RA. That has meant an added med of Enbrel to my already complex "cocktail". I also have DDD in the lumbar area and recently underwent anterior/posterior fusion at L4-5, L5-S1. I hope I can make a contribution here and also use a new place to "whine" smilewinkgrin
Gina
Lupus, RA, DDD, Anterior/Posterior L4-5 & L5-S1 fusions

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/4/2013 10:39 PM (GMT -6)   
Welcome to the Wolf Pack.
I have DDD in my L5-S1-no disk & naturally fused together.
I've been told I had lupus for 2 years now and considered moderate right now. I also have fibro.

We have plenty of cheese here for all of the "whine" you want to pour out.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

gr8tful
Regular Member


Date Joined Jan 2013
Total Posts : 79
   Posted 2/5/2013 9:38 AM (GMT -6)   
Thanks for the welcome Joy! I'll bring the cheddar next time :)

LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 2/9/2013 12:51 AM (GMT -6)   
Gina,
Welcome! I'm a newer member too and was interested in your story when I saw that you were diagnosed when you were 25. I found out on my 24th birthday that I had lupus. I've been battling for almost a year now and I just feel like its never going to end. I don't know which doctors to believe anymore and really the only people I'm beginning to believe is the "friends" on here :) And by the way, whine away, because I know it makes me feel better to get on here and cry, whine, kick, scream, whatever.
Endometriosis 2011, Lupus & Raynaud's March 2012

Meds- Lo Loestrin Fe, Plaquenil, Prednisone, CellCept, Prilosec, Celebrex, Tramadol

Lorik
Regular Member


Date Joined Feb 2013
Total Posts : 23
   Posted 2/10/2013 12:16 PM (GMT -6)   
I was diagnosed about a yr ago with Lupus (SLE), auto phospholipid syndrome and lupus anticoagulant. This came as a total shock after dealing about an entire year with major lower extremity weakness, fatigue. Feeling ill all the time. I also had been thru a battery of tests from. MRIs, Cts of almost every part of the body, EmGs , etc. was told at one point it was Parkinson's and was treated for months with three seperate meds. After weeks of having to be out of work (I'm a RN ) , I returned, frustrated but felt I needed to just push myself back to some form of normalcy. Nothing worked, fatigue became worse, pain increased, there were days I could barely make it thru my shift, I wanted no more tests, prodding, or drs saying they don't know what's wrong. I think the hardest part was actually having my neurologist ask me if everything was ok at home? At work? REALLY?..I was devastated..I assured her things there were just fine and the problem was with my body NOT my psyche. Well, that conversation led her to give me a referral over to rheum. Met with that dr after looking at test results he didn't have any answer either. However, he said just for the heck of it he was gonna have some indepth blood work done just to take a more indepth look. Well...up turned the Lupus.
Since dx I have changed rheumotologist, have done a yr of Placqueni., gabapentin along with lortab for pain. Meds seemed Tito work ok till past three weeks when it seems the walls just caved in...I have been so frustrated, angry lately I don't know where to go from here....
I found this site, and after reading some of the forums I figured this is just the place I might need to be right now to get me thru this time..I have a very supportive and loving husband, two adult kids who really have no clue to what I'm going thru, and my friends..well I can honestly say maybe one or two have really stuck by me.
So, pls bare with me as I begin to unravel with fear as to what will be next. smhair confused confused confused

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/10/2013 3:04 PM (GMT -6)   
Figuring out if a person has lupus is a hard thing to do because it has 1,000 faces. I hit it lucky on being able to get an allergist who was familiar with lupus rashes who decided to test me for lupus.

Lorik, have you considered talking with a councelor about the frustrations you're having?
I've been frustrated for awhile because Lupus has taken so much from me...strength, job, friends, and my love for the outdoors. I decided to go see a psychologist to help me with coping skills. It has helped me a lot.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lorik
Regular Member


Date Joined Feb 2013
Total Posts : 23
   Posted 2/10/2013 7:43 PM (GMT -6)   
Joy,

I recently saw a counselor about two weeks ago at the start of my most recent flare up..since it was my first visit with her time was spent basically laying ground work and history. Since then I haven't been back yet because after returning back to work for three days I ended up having repeat flare up which was twice as bad d sent me on bed rest, chg of meds, iv infusions and once again being out of work. I realize I need support but its hard to set up appt when I can't drive or physically be able to sit thru a session.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/10/2013 9:30 PM (GMT -6)   
That can be aggrevating.
I went to one session and felt so bad I should of cancelled but it was too late. She just got to see me on a really bad day.

Hang in there. I hope you feel better soon.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lorik
Regular Member


Date Joined Feb 2013
Total Posts : 23
   Posted 2/10/2013 9:43 PM (GMT -6)   
Thank you Joy!
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